Save ME/CFS Patients: Dedicated Care Unit in Toronto Hospital Needed

People with ME/CFS represent an exceptionally vulnerable population with unique needs when it comes to institutionalized care such as hospitalization and Long Term Care. For Canadian healthcare to be truly universal, it must include appropriate services for its entire population - including patients with ME/CFS.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neuro-immune illness that affects cognitive and physical functioning. It was found to affect 1.4% of Canadians in a 2010 CCHS study. Twenty-five percent of the afflicted are estimated to be severely affected, being bedridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, comparable to end-stage AIDS or end-stage renal failure. There is no known cause or cure, though autopsy findings report dorsal root ganglionitis - a type of inflammation of the spinal cord - confirming its' status as a neuro-immune illness. Some people improve with time while others are bed-bound for decades. It is estimated that 4% of those with severe ME/CFS have any type of recovery.

To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' is quite typical.

Despite the ravages of this illness, it is one of the least funded in terms of research dollars, receiving slightly more funding per year in the US than Hayfever.

Many people with ME/CFS cannot tolerate the hospital environment as it currently stands, and end up dying or relapsing because they refuse to go to a hospital that cannot care for them properly. Conversely, many do go to the hospital and end up dying or relapsing because the care did not suit their basic needs. People in 'first world' countries should not be dying of malnutrition, starvation or dehydration at home just because they cannot tolerate being in a hospital environment in order to get a g-tube inserted to feed them when they cannot swallow; they should not become paralyzed or lose their ability to speak because hospital conditions depleted their sleep; they should not die a slow, torturous death because medical institutions did not care for them properly; they should not be forced to walk to dining areas or bathrooms when they need a wheelchair to avoid exacerbation of symptoms or severe relapse. Graded Exercise Therapy is not tolerated by the very severely ill. Medical experts need to realize ME/CFS patients are the experts of their own experience and that 'treatment' programs must be individually created by the team (which includes the patient) to suit the individual, and not just to suit the guidelines set out by the Ministry of Health.

People with ME/CFS often cannot tolerate sensory stimuli including touch, sound, being moved, smell and visual input as it gives them neurological overload. They need an unusually quiet, low-lit place just to keep whatever functioning they have. They need to avoid the regular hospital cleaning agents as patients usually also have Environmental Sensitivities and can lose functioning if a nurse haphazardly sprays some seemingly innocuous thing like Febreeze or Lysol. The genetics of their methylation is different and they simply cannot manage in a toxic environment without relapse. They suffer from insomnia and have a greater need for sleep than any other illness population; if they do not sleep, global functioning decreases and severe relapse can follow. People with severe ME/CFS are also in such a weakened state which, compounded with extreme sensory over-load, produces a situation where they often cannot bear to have visitors even sit with them. Consequently, having social and health care workers with anxiety, post-traumatic stress disorder or flighty behaviours service their needs is not appropriate. ME/CFS patients who are bedridden may only have a limited amount of times their body can be moved before relapsing; they cannot be serviced by someone who rolls them over, puts on a diaper, rolls them back, then realizes they forgot to put the soaker under neath, needs to roll them back again, etc. They need workers who possess a strong skill-set and who are grounded, responsible and experienced to provide their services so they do not relapse.

To relate the unique difficulty that people with severe ME/CFS have, I point to the case of Emily Collingridge (pictured above). Even when she was in horrendous pain and needed extra morphine, often she would have to forgo its administration by her mother when she was too ill to tolerate having her mum even enter the room. This seemingly passive act could sometimes cause intolerable pain to the point of having to refuse medication that was desperately needed, and Emily would have to remain in pain so severe it caused her to hallucinate. This is the kind of unique, debilitating symptom of severe ME/CFS that makes the sufferer unable to tolerate anything at their worst, leaving them to feel as if the entire realm of experience is an assault.

In memory of ME/CFS patient, activist and author, Emily Collingridge, who died March 18, 2012 just shy of her 31st birthday (in hospital), I ask that a dedicated care unit for people with ME/CFS be created in a Toronto Hospital so this group has a safe, healing place to go when they need Long Term Care, hospitalization or respite for themselves or their caregivers. Emily was not the only person with ME/CFS to relapse from standard hospital care, but I truly want her to be the last.

Dedicated care units for ME/CFS inpatients are needed in every major urban center throughout the world. I call upon Ontario legislators to lead the way by creating the first one. Please mandate that an 8-bed dedicated care unit be created in one Toronto hospital to start serving those with ME/CFS who are in need of in-patient hospitalization, rehab, respite and LTC.

I just signed the following petition addressed to:Hon. Deb Matthews, MPP Minister of Health and Long Term Care -OntarioHon. Peter Tabuns, MPP Toronto-DanforthHon. Kathleen Wynne, Premier of OntarioHon. France Gelinas, MPP Nickel Belt, NDP Health and Long-Term Care Issues Hon. Eric Hoskins Minister of Health and Long Term CareJohn Tory, Mayor of Toronto----------------Provide Dedicated Care Unit for ME/CFS in a Toronto Hospital

People with ME/CFS represent a very vulnerable population with unique needs when it comes to institutionalized care such as hospitalization and Long Term Care. For Canadian Healthcare to become truly universal, the special needs of this unique population must be met.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neuro-immune illness that was found to affect 1.4% of Canadians in a 2010 CCHS study. Twenty-five percent are estimated to be severely affected, being beddridden with little to no functioning. This population has been shown in studies to have the lowest functioning of any chronic illness, similar to that of end-stage AIDS or end-stage renal failure. There is no known cause or cure, though autopsy findings often report doral root ganglionitis - a type of inflammation of the spinal cord - confirming it's status as a neuro-immune illness. Some people improve with time while others are bed-bound for decades. It is estimated that only 4% of those with severe ME/CFS have any type of recovery.

To die of this illness or it's complications is atypical; however, to hover in an in-between state where one experiences a 'living death' is quite typical.

Despite the ravages of this illness, it is the least funded in terms of research dollars receiving slightly more funding per year in the US than Hayfever.

Many people with ME/CFS cannot tolerate the hospital environment as it currently stands, and end up dying or relapsing because they refuse to go to a hospital that cannot care for their basic needs. Conversely, many do go to hospital and end up dying or relapsing because the care did not meet their basic needs. People in 'first world' countries should not be dying of malnutrition or starvation at home just because they can't tolerate the hospital environment in order to get a g-tube inserted to feed them when they can't swallow; they should not become paralyzed or lose their ability to speak because hospital conditions depleted their sleep; they should not die a slow, torturous death because medical institutions did not care for them properly.

People with severe ME/CFS cannot tolerate sensory stimuli including touch, sound, smell and visual input as it gives them neurological overload. People with severe ME/CFS have the lowest functioning of people with any chronic illness; they can be paralyzed, doubly incontinent, unable to eat, unable to speak, unable to tolerate other speaking to them, unable to read, unable to see and are often bedridden for years in excruciating pain. They are held in a state that most people only get to experience when nearing death. They have no quality of life. They need a very quiet, low-lit place just to keep whatever functioning they have. ME/CFS patients need to avoid the regular hospital cleaning agents as they usually also have Environmental Sensitivities and can lose functioning if a nurse haphazardly sprays some seemingly innocuous thing like Febreeze or Lysol. The genetics of their methylation is different and they simply cannot manage in a toxic environment without relapse.

People with ME/CFS suffer from insomnia and un-refreshing sleep, having a greater need for sleep than any other illness population; if they don't sleep, global functioning decreases and severe relapse can follow. People with severe ME/CFS are also in such a weakened state which, compounded with extreme sensory over-load, produces a situation where they often can't bear to have visitors even sit with them. Consequently, having social and health care workers with anxiety, post-traumatic stress disorder or flighty behaviours service their needs is not appropriate. ME/CFS patients who are bedridden may only have a limited amount of times their body can be moved before relapsing; the can't be serviced by someone who rolls them over, puts on a diaper, rolls them back, then realizes they forgot to put the soaker under neath, needs to rolls them back agin, etc. They need workers who possess a strong skill-set and who are grounded, responsible and experienced to provide their services in a way that they can tolerate receiving them.

To relate the difficulty that people with severe ME/CFS have, I point to the case of Emily Collingridge. Even when she was in horrendous pain and needed morphine, often she would choose to forgo it's administration by her mother when she was too sensitive to even tolerate having her mum enter the room. Even this seemingly passive act could sometimes cause intolerable neurological overload to the point of refusing much needed medication, and Emily would have to remain with pain so severe it caused her to hallucinate.

During her two years in Ontario Healthcare facilities, the author of this petition, Liisa Lugus, relapsed severely several times, returning to being paralyzed and mute after just relearning how to walk when heavy hospital cleaning agents were used in her ward. Her doctor, who didn't believe ME/CFS existed, said she didn't walk because she 'didn't want to'. PSWs refused to do her personal care or feed her, calling her lazy. They disrupted Liisa's sleep so severely by gossiping at all hours of the night in her room that she had to leave in an ambulance without being discharged to save her life.

In memory of ME/CFS patient, activist and author, Emily Collingridge, who died March 18, 2012 at the young age of thirty-one, I ask that a dedicated care unit for people with ME/CFS be created in a Toronto hospital so that people with ME/CFS have a safe place to go when they need Long Term Care, hospitalization, rehab or respite for themselves or their caregivers. An eight-bed unit with one nurse in one Toronto hospital would not be that expensive to cover; indeed, it would cost the province less in the long run as healthier people are more productive people.

It will not necessarily require lots of additional funding for maintenance, as ME/CFS patients who need in-patient care will just be taken out of other healthcare institutions and consolidated in one safe place. There is room in the budget to make this work.

There are signatures from many countries on this petition because there is a world-wide need for dedicated care units for ME/CFS patients. Toronto is a world-class city: please lead the way in creating one!

Emily was not the only person with ME/CFS to relapse from standard hospital care, but I really want her to be the last.